Treatment Cycle 2 - Day 5

When we met with her last Thursday, Dr. Hurvitz was extremely excited about how much my tumor has shrunk. Even though she had said that it would start shrinking right away, she was as pleased as I was that it actually did, and I think she was surprised by how much. I keep having the urge to ask her what's typical or what's to be expected, and I have to remind myself that there is no "typical" or "expected" for this treatment with my type of cancer - it's a trial. What I experience will become someone else's "typical" if the treatment is successful and becomes the standard of care.

Prior to the invention of Herceptin (trastuzumab) in the 1990s, HER2-positive breast cancer was the worst kind you could get - the most aggressive, the most likely to metasticize, the most deadly. When news spread in 1994 that Genentech had found a drug that could not only treat it, but in many cases could cure it, patients literally stormed the gates. Inspired by AIDS activism of the previous decade, these women staged demonstrations, demanding that Herceptin be made available to them - and now, not after ten or fifteen years of iterative clinical trials. Genentech, who had been dragging their feet on Herceptin and even considering shelving it, immediately launched large-scale trials. It was an inflection point in the history of cancer, the first time a pharmaceutical company came together with oncologists and patients to get the drugs they had to those who needed them, immediately.

I recently spoke to another woman, Patient #1 in my trial, who hadn't read the consent form carefully and was distressed to realize as she was finishing the neoadjuvant phase that our adjuvant treatment includes both T-DM1 and Perjeta, rather than just Perjeta as she had assumed. Although she has been tolerating the treatment well, she was unhappy about having to go through another twelve cycles of it. I had to laugh at how different her perspective was from mine - I'm thrilled to be getting all these extra drugs that I couldn't get otherwise. I feel like I've really scored! I didn't have to fight with Roche or Anthem Blue Cross to get these drugs - they're being handed to me willingly, in exchange only for data about the progression of my disease (or lack thereof, we hope).

In the past I have tended to think of medicine as something static, where the big discoveries were made generations ago - like aspirin, penicillin, and vaccines - or haven't been made yet and probably won't be in my lifetime - like the cure for the common cold. But cancer is different - it wasn't even understood on a biological level until the 1980s, and treatments have been evolving rapidly ever since. Although no one has talked to me about them, I understand the risks of taking these new drugs. There is no long-term data about them. No one can tell us what effect they will have on my body in ten years, twenty years, fifty years. Based on the science, there is no reason to believe that there will be any lasting harm (or benefit, for that matter) - but scientists have been wrong so many times before. The history of cancer treatment is riddled with unintended consequences. And even if I wanted to play it safe, there aren't too many options. Even "standard" chemotherapy is not so standard - the specific drugs used are always changing. There is no status quo; there is only yesterday's treatment and tomorrow's treatment. Given that choice, I am so grateful to be getting tomorrow's treatment.